Balo’s disease : Has anyone been told they... - My MSAA Community

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Balo’s disease

Doodles57 profile image
13 Replies

Has anyone been told they may have Balo’s disease? Supposedly it’s rare and aggressive. I’m waiting to hear from my neurologist to explain why the radiology said I may have this.

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Doodles57 profile image
Doodles57
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13 Replies
MaryMargaret1966 profile image
MaryMargaret1966

I have not heard of this before. In looking it up, I certainly hope that this is not the outcome of your symptoms. I am a bit perplexed as to why your neurologist would tell you you may have this but not be positive with explanation. I'm sorry to hear that your living with this scare /fear until they figure it out. Sending you hugs & prayers.

Royjr profile image
Royjr

What I’ve read it’s similar to MS, but I don’t understand why a Radiologist would tell you. This is the first I heard of this disease. I see how the Radiologist can see the particular lesions but I think your doctor would be the one to tell you.

This is just my opinion and I wish you the best.

Iona60 profile image
Iona60

In medical matters, one thing that I've learned over the years is not to worry in advance. I've been told too many times that I may have this or that, only to find out that the suspicion was wrong. Now I wait for the actual diagnosis.

Doodles57 profile image
Doodles57

I’m waiting to hear from my neurologist. Hopefully Monday or Tuesday. He only treats MS and I don’t know if he’s seen the radiology report yet. He’s not in the office on Fridays. I love the instant access to medical test results but sometimes as this time it’s not so good to get it before the doctor. I’m not overly concerned since the radiology said the findings were non specific and could represent Balo’s disease in that particular area. With this lovely MS monster I’ve learned anything is possible. Appreciate the encouraging words. We’re all so different in how this disease treats us. Happy Easter to everyone. I serve a living savior who will see me through.

Midgey_Midge06 profile image
Midgey_Midge06 in reply toDoodles57

My lumbar puncture said i cud had Mad Cow Disease (its called something else but its basically what it is) and also Alzheimers. It is scary when u hear that before ur doc can explain. I totally understand what u r feeling! Hang tight!

Doubled51 profile image
Doubled51 in reply toDoodles57

Now that’s what I love to hear on Easter. He’s not there. He has risen. Thank you Jesus. Hallelujah.

Donnie

bxrmom profile image
bxrmom

I found this about Balo's Disease on the National MS Society site as I had never heard of it but looks like it is closely related to MS: nationalmssociety.org/What-...

Please keeps us updated on what you find out. Good luck.

Jessie

eharoot profile image
eharoot in reply tobxrmom

thanks for info !!

greaterexp profile image
greaterexp

You're in my prayers, no matter what it turns out to be. Keep us posted, won't you?

Kevin_McMillan profile image
Kevin_McMillan

I wish you the Best and you are in my prayers!

Doodles57 profile image
Doodles57

Thank you. I’m still waiting to hear from my neurologist.

6092177588 profile image
6092177588

Thanks, what is this? Symptoms

Doodles57 profile image
Doodles57

I asked my neurologist and he didn’t say anything about it just that my mri is stable but my neurological physical therapist said it’s there but appears the Tecfidera has kept new lesions from forming. From what I see online it says a rare and can be aggressive form of MS.

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